My Stutter Scared Me—Until I Found My Community

I don’t remember exactly what I typed into the search bar; I only remember being seventeen and hopeless. Despite years of speech therapy, I still stuttered as much and as noticeably as ever. I was going to stutter the rest of my life, and I saw no way in which that life could be a good one.

Whatever it was that I entered into Google—probably some combination of “stutter” and “help”—the very first search result was promisingly actionable. Two nights later, car keys in hand, I told my mom, “I’m going somewhere to do something that could be really great or not. I’ll let you know.”

At the designated hour, I arrived at a squat brick building on the campus of my local state college and entered a small, muggy room. At a large oval table sat a lone man with bright orange hair and dark-rimmed glasses. His face was kind and open. In a warm, Southern rhythm he asked, “Are you here for the support group?”

Dan introduced himself as the group leader of our local chapter of the National Stuttering Association (NSA). The chapter met once a month for two hours to talk about what was important to them—challenges they’d faced, victories they’d claimed. In this space, they found commiseration and counsel, a room full of people who talked like them, who listened with rare understanding.

Tonight, he said, was a strange anomaly: All the regular attendees—there were usually between six and twelve of them—had canceled. It was just him and me, one-on-one. This had never happened before, and he was sorry I couldn’t meet some of the regulars for my first meeting, but I could meet the gang next month.

First, he told me about his stutter. He recounted giving fake names at Starbucks; the insurance agent who hung up on him because she thought the call dropped when he paused between words; ordering a meal he didn’t even want because it was easier to say; the chest-cracking panic he felt when a realtor benignly asked, “What was your name again?” I didn’t realize I was crying until I felt a tear slide warm down my cheek.

In Dan, I saw myself reflected back in uncanny detail. I’d also given fake names to baristas, been hung up on by receptionists, nearly thrown up when asked to introduce myself even in the most mundane situations. But I never told anyone. It was too embarrassing to say out loud and too absurd to earn anyone’s empathy. Yet here he was, unfazed and unashamed to admit that his life looked a lot like mine.

Until I met Dan, I saw disfluent speech as an immutable barrier not just to success but to normalcy. The adult world, of which I was on the precipice of entering, wouldn’t accommodate me. I’d simply drawn a short straw. In a year, I’d be off to college—what then? Disfluency would doom my grades, internship interviews, potential friendships.

Then Dan described his own life, anchored by a rewarding job, a prestigious master’s program, a wonderful marriage, and a new house. He was employed and loved and appreciated—all things he thought impossible when he was my age—with a calendar punctuated by NSA meetings and get-togethers with members. Tears now spilled conspicuously from my eyes, but I didn’t care—this was big. I no longer saw just myself in Dan, but a path forward. The self-portrait that Dan painted offered an alternative. Even in adulthood, he shared my frustrations and anxieties, but he still seemed so adjusted. Comfortable. Normal. This was the opening of a portal, the discovery of a possible future. Hope.

Finally he talked about the NSA—its hundreds of chapters, decades of advocacy, and extensive offering of events and programs. He’d made so many friends through the organization, he said, and he offhandedly mentioned someone he’d met at “the conference.”

“The conference?” I interrupted.

“Yeah, the NSA conference,” he said. “It’s an annual conference for people who stutter—it’s always held at some big hotel in a cool city. About a thousand folks come. There’s workshops, talks, a talent show. But the best part is going out for drinks with people, staying up talking till sunrise, then seeing them again the next year.”

He told me his favorite night of the yearly four-day conference was going out to dinner with a group of other conference goers—he loved when everyone ordered their food, how, one after the other, each person stuttered out the dish they wanted, blocks and repetitions and prolongations ricocheting around the table.

“That sounds amazing,” I said.

Dan piously replied, “It will change your life.”

I left that night feeling—for the first time—that my stuttering wouldn’t interfere with my living fully, that it might even allow me to live more fully than I had thought possible.

I returned for the next month’s meeting, and the one after that, and the one after that, all of them well-attended. I loved seeing the other regulars: Max, the Brazilian astrophysicist who speaks five languages; Nina, the former lawyer pursuing her dream of screenwriting; Anna, the archivist who takes improv classes on weeknights and likes all my favorite bands; John, the white-haired Rolex-wearing broker who comes to meetings straight from the office. We traded gripes—about the TV interviewer who commented that Max seemed “shy” instead of engaging with his research; about the coworker who compulsively finished Anna’s sentences; about my dentist, who asked if I’d forgotten the name of my high school when I blocked on its first syllable.

After each meeting I felt lighter, looser, having spent two hours listening only to disfluent speech—to voices that sounded like mine.

Each month, we complained with the composure and dispassion of old pros; these indignities came with the territory. Fellow students bemoaned getting called “brave” for stuttering in class presentations. Public-facing employees railed against sentence-finishers and word-guessers. Everyone liked my impression of The Face—the one confused listeners like to make at people who stutter (brow furrowed in confusion, mouth contorted in amusement, eyes incredulously wide). We genuinely laughed at each other’s jokes, even when the timing was off. We nodded vigorously and mm-hmmed affirmatively. After each meeting I felt lighter, looser, having spent two hours listening only to disfluent speech—to voices that sounded like mine.

But our connection wasn’t confined to the meeting room. We friended each other on Facebook, traded business cards, went to Dodgers games together. After my final meeting before relocating for school, one member emailed me to thank me for “always making meetings fun, funny, and reminding me what courage is.”

Once I moved upstate for college—to a city where I knew only my roommate—I found a new chapter of the NSA and took two trains and a bus to get there. I didn’t feel the usual jitters that come before entering a room of strangers. We already had such a deep commonality, so were they really strangers?

By the first meeting’s end, I had a handful of new friends. This time, I looked to the NSA not for a sense of hope, but for a sense of home. My first chapter proved to me I was part of something bigger; in this new chapter, hundreds of miles away, I got a sense of how big that something was.

After about half a dozen meetings, I was invited by the chapter to speak on a panel for grad students studying to be speech-language pathologists, or SLPs. It was me and three men (a representative sample, as most people who stutter are men), and I was the youngest by far. We fielded well-meaning questions, knowing our answers could influence how these future SLPs treated their stuttering clients.

I was quick, then, to expound one of my favorite things about my stutter: “It’s a very efficient way to filter out the assholes.”

I told them about my first month of college, where I naively expected to make lots of friends among my mature, tolerant peers. But whenever I introduced myself disfluently, I was overwhelmingly received with derision, imitation, or condescending incredulity.

“I was so grateful!” I told the audience through a smile. “These people saved me so much time! Well, that guy sucked, this person isn’t worth another minute—all good, on to the next.”

Afterward, students rushed over to me to tell me how much they’d learned, what a great orator I was. “You should totally do stand-up,” one woman insisted, another student beside her cooing in agreement. The deluge of positive reception astonished me. Just a few years before, I’d never articulated aloud the frustrating moments and anxious thoughts that were a by-product of my stuttering. Now, I’d just spent a whole evening sermonizing to strangers, baring my heart. And they actually wanted to listen.

That night, the chapter leader, Carlos, gave me a ride to the train station. He said the panel went great and he was glad I had participated. We floated down streets lined with dainty string lights, and he queued up a homemade playlist—an inspired selection of folky lady singer-songwriters. As the music diffused through the car, we sang in unison to an Anaïs Mitchell song and made plans to go to her concert the next month. In an unfamiliar city, the NSA had once again led me to my people. I saw that chapter meetings could connect me with people with whom I shared not just the experience of stuttering, but also mutual passions.

A few months ago, I relocated across the country to Brooklyn. My first week in my new neighborhood, where once again I knew no one but my roommate, I googled the local NSA chapter and logged the next year’s worth of meetings in my calendar. We meet over Zoom and will do so until we can safely congregate. Zoom can create unique challenges for a group of stutterers: When two people try talking at the same time, who goes first? Is that person frozen, or are they just blocking on a word? But we make do.

During my first Brooklyn meeting, a new attendee was grappling with feelings of shame around her stutter. I told her those feelings made sense: “It’s dehumanizing when your listener focuses on how you talk rather than what you’re saying.” As the words flew assuredly out of my mouth, I noticed I was doling out to others the advice and affirmation that the NSA first gave me long ago. After five years as an active participant, I considered for a moment what I needed from it now in my young adulthood.

Al, a retired teacher in his seventies, chimed in. “I don’t know if she realized it, but Sophia just made a really great point,” he said. “That’s something that took me a long time to understand.” I beamed and thanked him, placing my palm over my heart. It dawned on me that the support members offered each other could come in many forms. We don’t just make each other feel better; we make each other feel good.

As the meeting ended, Al said with fatherly pride, “Great job, Sophia!” I giggled and said goodbye, basking in a glow that lingered long after I exited the call. Al wasn’t just my people—I was his people, too, and it had taken him much longer to find me than it had taken me to find him.

Since I started attending at seventeen, I’ve always been the youngest person at meetings (most people who stutter don’t discover the NSA until much later in life), but I’ve never for a moment felt out of place. This is my community. We don’t look or live like each other, and we are as racially and socioeconomically diverse a group as one can imagine.

None of us even stutter the same—some of us block more, others experience more repetitions or prolongations; for some, fricatives (v, f, z, s, etc.) are a nightmare, and for others, plosives (p, b, t, d, etc.) are the worst. We’re not forced together by work or school, or even brought together by common interests. We’re bound by an experience we didn’t choose to have. We share a mutual understanding that exists between people whose bodies work—or, refracted through an able-bodied gaze, don’t work—the same. Knowing people—and being known—in this way has been the most profound privilege of my life.

In a 2018 article for The New Yorker, Matt Weinstock writes about the making of the 1939 film The Wizard of Oz from the perspective of the little people who were cast to portray munchkins. Weinstock recounts the “moment of homecoming” that took place “for the 124 little people who descended on the set of Munchkinland.” Some of them wept when they first entered the soundstage; several met their spouses and formed lifelong friendships on set. Never before had little people congregated in a shared space like this. I felt this moment of homecoming when I met Dan at my first NSA meeting; I can only imagine the overwhelm I’ll feel when I descend onto the bustling floor of the NSA conference.

For those of us with disabilities, we’re rarely born into disabled families or raised in disabled communities. We spend much of our lives, as Weinstock writes, in “helpless diaspora, and reconstituting the dandelion is the dilemma of our lives.” It’s hard for people who stutter to find one another—to find our people—because we are scattered. It’s harder still because we are always hiding. This, like so many other aspects of our lives, is a survival mechanism. But by hiding from those who don’t stutter, we end up also hiding from each other.

At the first Brooklyn NSA meeting I attended, I decided for the first time, in five years of membership, to read the Closing Words. Chapter meetings are bookended by reading aloud the Opening and Closing Words, which anyone can volunteer to do. I’d never before volunteered, still haunted by the hot-faced, bleary-eyed shame of fumbling your turn to read a passage out loud in class.

In my mind, I know the recitation of these words is different: not an assessment or a performance, but a ritual and an affirmation of community. Still I kept silent for countless iterations of “Who’d like to read the Opening Words?” and “Anyone want to read the Closing Words?” Not this time.

Why I felt up to the task on that specific night eludes me. Maybe I finally felt grown-up enough to take it on. Or maybe, after having gone to dozens of meetings, I no longer felt like a guest and instead like a veteran. But I mostly suspect my recitation was in part a show of gratitude: Immediately after arriving in this distant city, I’d been welcomed and embraced. Helping perform this ceremony felt like the least I could do.

The Closing Words are only four sentences, but they felt sprawling typed out in the Zoom meeting’s chat bar. Still they felt so good to say—pockmarked, as always, with disfluencies. They’re some of my favorite words, carrying a unique weight recognized only by a select few.

“We are not alone,” they conclude. “Together we are strong.”

• 0